Hi

[Moll]

I have just typed out a long bit on who I am and the trials and tribulations of trying to get help for my son and once I hit post it just disappeared, so excuse me if this is a bit piece meal put to save me typing I've cut and pasted from another forum i go on.

 

My son will be 4 next month

 

We were referred by health visitor after asking for help, well assessment with the Pead. didn't go well letters went missing and referrals were not made.

 

we were also referred for play therapy as well I stopped the play therapy, being allowed to chuck toys and sand around was not working she was looking for emotional issues with son and decided that was the root of his problems but he is a emotionally uncomplex kid, it he is angry, upset or such you know about it he has no bottled up emotions, he will ask questions, it is his behaviour, his obsessions and him being a danger to himself that we are worried about he was becoming less communicative and more violent so it had to stop.

 

Well after chasing up the pead he had a developmental check to ensure he was on track with skills, checking his colours, repetition response to questions. Well as soon as I put him in the car he started screaming as he did not have his school uniform on I explained we were not going to school but to see the doctor (now I don't tell him in advance as he will happily get dressed and leave the house but if I tell him where we are going and he doesn't want to I have no chance) well he started he hit punched clawed at me braced his legs so I couldn't shut the car door. I eventually got him in drove 15 minutes with him screaming got there and couldn't get him out his dad had to come and help me it took 2 of us to get him out and he had to carry him in, good job he met me there.

 

The assessment was a joke, as he was screaming spinning round and just being "normal" his dad was standing by the door to stop him running, the Dr was not good with him as she kept trying to do it by the book not work with him she had wooden squares and wanted him to tell her the colours he refused so she tried to say he didn't know them, I ended up saying can you run and sit on the red chair, can you bring me the yellow ball. She wanted to see if he could undo a buckle to check his fine motor skills but he had no interest in it so she tried to say his motor skills were bad till I got him to demonstrate he could remove his dads chain and do the fastener on my bag. She was trying to get her to repeat what she was saying but as she was middle Eastern he could not understand so I has to sat the sentence and then trying to say he couldn't do it but when I said it he could.

 

Following this we had a meeting with the pead which was was great he praised us on how well we work with him said we were doing a great job there is nothing he can actually do to help as we have it right but he will be there if we need him, he is too young to give a diagnosis to but they are thinking mild autism with possible ADHD so exactly what I thought.

 

The plan of action is melatonin 6mg per night to get him to sleep thus allowing us to sleep, as we won't be getting up at 3am as Daniel wants to play we should function better, we need to keep working on the wetting thing but if we are less tired it might be easier.

 

He will be reviewed every 6 months he is going to be assessed by a speech therapist to see if she can help him with his lack of teeth he knocked them out

 

He may grow out of it it may stay the same he may get worse but he is in the system so any changes for the worse and we don't have to go through the channels we have been through to this point.

 

But the consultant was puzzled and admitted so, he has a great vocabulary, no problems with emotions, great motor skills, but many other indicators of autism, the well developed skills he has throws any firm diagnosis off.

 

 

Why all the delays were happening and letters were being lost, we were referred to CAMS by the GP after son tried to eat a light bulb that I had put down while I answered the phone.

 

We got CAMS appointment I phoned to let them know who we had dealt with in the past so they could get reports got there they hadn't done so and they could not help us with no reports, I chased them up this week a month later they are still waiting for the pead. now this doesn't surprise me as we have not got speech therapy referral, school have not been contacted, I had trouble getting another prescription of melatonin they have reduced him to 3mg which is not working so he is again not sleeping.

 

I'm so cross with the pead. as he promised help but either him or his secretary are not doing their job.

 

I'm just very fed up at the moment.

[NickyB]

Hello, Moll

 

Crikey, it sounds like you've been through a lot

 

I have a 5 year old son who was diagnosed with high-functioning autism last year. Thankfully, we've had a relatively easy time with all the different agencies here - they do communicate quite well, although I do have to keep chasing things up just to make sure.

 

I'm sure you'll find plenty of support and advice on this forum - I've found it so useful to be able to discuss the issues we have with people who actually understand what it's like.

 

Take care

 

Nicky <'>

[cmuir]

Hi

 

Very long-winded, but this was my experience of trying to get a diagnosis for my son:

 

My son is 7 now and was diagnosed at 4.5 with Aspergers. Since he was 15 months old I knew something was wrong, but didn't know what. I struggled on until he was 3 before finally losing my temper with our HV and GP. Suddenly, referrals started happening. Great I thought, but for 1.5 years were were passed from pillar to post with lots of assessments/appointments with people who said 'he was a complex little boy' and 'didn't fit an ASD diagnosis'. By that time, I felt certain that R had AS. I'm not health care professional, but everything I was reading certainly pointed to that. Although he didn't (and doesn't) tick every box, there's was a lot that seemed to fit. R's eye contact was variable, he appeared to have a good imagination on the surface, his language appeared good on the surface, etc. During all this time I kept questioning my own sanity, whether I was imagining all these things, I therefore kept a diary over an 8 month period of all the strange behaviours eg Christmas Day he wouldn't open presents and would simply stack them up behind the dining room table - turns out that was because they were wrapped up, I hired a fire engine for his 4th birthday and he just sat twiddling a toy pirate and wouldn't look at anyone or participate, he would insist on walking same route to local shop and all hell would break loose if we deviated from that route. The list could go on. I'd photocopy the juicy bits and send them in advance of appointments to the various people. Yet again, I'd had enough and wrote a letter to the Paed saying I was sick of being passed from pillar to post, we'd had numerous reports which suggested AS and I wanted answers (bearing in mind, the earlier the diagnosis, the earlier the help! - certainl). We were just getting nowhere. By chance, I got wind of a consultant that was supposed to be first class ? and she was! I went over the heads of many (and didn't make myself popular in the process - for which I make no apologies for!) and pleaded for an appointment. Within 3 weeks we had a definitive diagnosis and suddenly doors started opening. Consultant said that the diary combined with all of the reports and backed up by everything I'd be saying helped. Must say, I've found the whole diagnostic process incredibly stressful. I might of managed to climb that mountain, but there are many more that lie ahead.

 

I truly emphathise with you right now, but don't give up. Keep a diary and go over people's heads if you have to. Don't wait months for appointments, phone and ask if your name could be put forward to cancellation appointments. Your child doesn't have to tick every box (there's an obvious reluctance to provide a diagnosis in case it's wrong, but even so, it is possible for a child to just make it into the autistic spectrum - as my son did). Hang in there.

 

Best wishes.

 

Caroline.